Update, Checking In

Update, Checking In

Joined: May 4th, 2010, 1:03 pm

April 3rd, 2018, 5:12 pm #1

Haven't posted in two or three years. Drop in once in a while to see whats going on. So far so good for me. I'm in my ninth year of remission and the only area of concern in that the average is 10 years. I had a pretty rough three weeks following chemo (2CDA) in 2009, and dread the thought of doing it again if I relapse.
The VA just denied a claim I had pending for radiation exposure based on my not filing in time. VA regulations and my VA Hematologist both state that there is no time limit for Leukemia to manifest. Air Force also says they have no record of my exposure. I do have and have submitted hard evidence of exposure which the rating officials seem to have ignored. I'm appealing it now so we will see how it turns out?

There was a section of this chat room where HCLer's could post their history/stories, I haven't been able to find it this visit. Has it been eliminated?, or am I just having a bought of Senior Citizen Fog?

Wishing you all good health and long remissions.

FLCoyote
Quote
Like
Share

Joined: March 27th, 2014, 7:18 pm

April 3rd, 2018, 11:06 pm #2

I think that you're looking for  http://www.network54.com/Forum/489876

(Remember that you have to login to post there.)

Congratulation on reaching nine years. I think you should postpone your worries a little longer. Maybe you' can be above average?
Quote
Like
Share

Joined: May 4th, 2010, 1:03 pm

April 4th, 2018, 3:37 pm #3

Thanks for reply, that was what I was looking for, Is use to have a link direct from this site. Hope all is well with you.

FLCoyote
Quote
Like
Share

Joined: March 30th, 2003, 5:17 pm

April 4th, 2018, 10:31 pm #4

Haven't posted in two or three years. Drop in once in a while to see whats going on. So far so good for me. I'm in my ninth year of remission and the only area of concern in that the average is 10 years. I had a pretty rough three weeks following chemo (2CDA) in 2009, and dread the thought of doing it again if I relapse.
The VA just denied a claim I had pending for radiation exposure based on my not filing in time. VA regulations and my VA Hematologist both state that there is no time limit for Leukemia to manifest. Air Force also says they have no record of my exposure. I do have and have submitted hard evidence of exposure which the rating officials seem to have ignored. I'm appealing it now so we will see how it turns out?

There was a section of this chat room where HCLer's could post their history/stories, I haven't been able to find it this visit. Has it been eliminated?, or am I just having a bought of Senior Citizen Fog?

Wishing you all good health and long remissions.

FLCoyote
..click on HCL Census and log in, you'll get that site.

It is not my own site. Someone else created it. But it is Network54, like my site. If you read below, down a few headers, you'll find out the NW54 has been sold to Tapatalk. They are in the process of converting NW54 onto their own servers with different software--so the place will look differently from now and some of these links on my homepage will not work.
Quote
Like
Share

Joined: January 16th, 2018, 8:38 pm

April 11th, 2018, 10:32 pm #5

Haven't posted in two or three years. Drop in once in a while to see whats going on. So far so good for me. I'm in my ninth year of remission and the only area of concern in that the average is 10 years. I had a pretty rough three weeks following chemo (2CDA) in 2009, and dread the thought of doing it again if I relapse.
The VA just denied a claim I had pending for radiation exposure based on my not filing in time. VA regulations and my VA Hematologist both state that there is no time limit for Leukemia to manifest. Air Force also says they have no record of my exposure. I do have and have submitted hard evidence of exposure which the rating officials seem to have ignored. I'm appealing it now so we will see how it turns out?

There was a section of this chat room where HCLer's could post their history/stories, I haven't been able to find it this visit. Has it been eliminated?, or am I just having a bought of Senior Citizen Fog?

Wishing you all good health and long remissions.

FLCoyote
your chances of getting HCL again is the same as it was the year before. The chances remain about the same. The first couple of years after treatment they are a little higher. I also had a particularly difficult time. Was hospitalized for 6-7 weeks. Don't think I could go thru that again. I am close to 14 years. You don't need to worry anymore than you did in previous years. Good luck !
Quote
Like
Share

Joined: March 30th, 2003, 5:17 pm

April 22nd, 2018, 2:34 pm #6

Hi Brad,
Just for the record I'd CC Trump and his Sec of the VA (Ronny Jackson). Everything I did with the VA on paper I'd CC them. I'd also CC your state reps in the Congress, email-spam their asses. Hell I'd CC the local newspapers and FOX NEWS. As a vet I find the VA-system offensive and wish they'd disband it and give vets full (thank-you-or-you-service) insurance coverage. But most of the thank-yous are Tommy This and Tommy That thank you=rhetoric=vets are used to it, aren't we? Make men and women (of the all-volunteer-service) have one more reason to join the military, and stay in. You don't need the VA death panel telling you "NO!" as a default response to you health needs. 🙃

PS: I find it really cute that the likes of Hanoi John, McCainic, the Bushes, and other pols who served don't use the VA they tout as so wonderful. Maybe they don't want to overload the system; maybe they don't think their high profile would help the VA and vets who deal with the VA; maybe they think the VA sucks.
Quote
Like
Share

Joined: May 4th, 2010, 1:03 pm

April 25th, 2018, 3:23 pm #7

rbmac5,

Reference my VA Claim.  No one I've talked to, including the County Veteran Service Officer who prepared and submitted the claim can understand why its been denied twice.  The County VSO told me that the evidence I submitted was conclusive and far more convincing than other similar claims that were approved.  My VA Hematologist ever wrote a letter and attached current medical research in support of my claim.  My understanding is that if this appeal is denied that I can request an in person hearing before a formal board and that the board has complete decision making authority.  Neither of the reasons I received for denial hold up for denying the claim and I guess I would be satisfied to just get a logical reason for denial.  The denials I did receive read like someone going through a checklist and not actually reviewing the claim.  The VA has really been pretty good to me, but they did make a few mistakes in the past.  To their credit the mistakes were corrected even if it did take two years.  VA did treat my HCL as an emergency when my blood counts were so low that I had a bone marrow and started chemo within two weeks of the blood test results.  Oh well, thats my rant for the day.  Hope all is well with you.    FLCoyote
Quote
Like
Share

Joined: March 30th, 2003, 5:17 pm

April 26th, 2018, 5:52 pm #8

Yeah the VA does somethings good if you don't mind waiting, fighting, bickering and scratching you head???

I just heard Trumps VA Nominee Ronnie Jackson--doctor to three US presidents--withdrew his nomination. The VA is a consummate swamp. What I did not realize is that some Vet groups do not want it fixed. It's a thing that has taken on a life all its own. I really wish it was disbanded in favor of giving Vets full insurance. That's the only cure. No one can fix it.

Vet health to the VA is a bureaucratic exercise first and a health org second in my experience.
Quote
Like
Share


Confirmation of reply: